Congenital Heart Defect

This week is Congenital Heart Defect Awareness Week. What I hear most of the time is that 1 out of every 100 babies are born with a Congenital Heart Defect (CHD). The more astonishingly statistic is that each year 36,000 babies are born with a CHD (according the the American Heart Association). In November of 2008, Madelynn became one of those 1 in 100. I must say it has been an amazing journey.

Below is a photo of Madelynn 3 days after surgery (November 2, 2008) and a photo I can pull out of my purse at any given moment. I don't want to ever forget but more important any chance I get to make others aware, I will do it any day of the week and twice on Sunday.

But if I was really going to do my job to spread awareness, having a child with a CHD is NOT the end of your world.....It is only the beginning. It is true your life will never be the same but at some point you find your road to be travelled and voice to educate others about your incredible journey. Levine Cardiac Kids is a support group for CHD families and they have really helped us see there truly is life after a CHD diagnosis.

CHD kids want to be and treated like everyone else. They don't want to be picked out of the crowd they want to blend into the melting pot and be as normal as possible. Most times unless someone tells you it is hard to pick those 1 in 100 out of the crowd. Does the smiling face below look like a heart patient to you. It is a recent picture of Madelynn that will soon be hanging on my wall.

If you are ever moved to make a tax deductible donation to the American Heart Association please note Legacy for Life on your check. Your donation goes specifically to Congenital Heart Defect research.

Today, Madelynn sees the cardiologist once a year, the pulmonologist twice a year (collapsed lung and paralysis in her diaphragm, side effect from surgery), a nutritionist as needed to help with her weight gain and we sneak in the pediatrician's office for weight checks once a month. She's doing stellar and her outlook is better than we could have ever asked for. We celebrate all the little details and worry about the big stuff when and if they ever happen.

Happy Congenital Heart Defect Awareness Week!!!

TTFN~